MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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MixtaJones's picture
Replies 1
Last reply 4/20/2014 - 1:42am
Replies by: Anonymous

Hey all,

My Oncologist has suggested I try to get into a clinical trial that is a IPI+PD1 trial in phase 3. the issue I have is that closest center that is doing the trial is 4 hours away in Los Angeles. The clinic also is not covered by my HMO.

I was wondering what clinical trials cover from a financial standpoint? Do they pay for travel, hotels, Dr. apointments, the medications, etc? I know that getting the right care is the most important thing but if I am going to be out of pocket $100,000 I won't have a house to be a survivor in.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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JessV's picture
Replies 1
Last reply 4/20/2014 - 12:29am
Replies by: Marianne quinn

Hello,

 

I am hoping some of you might have experience in what I am going through as I feel really alone. I just turned 26 a couple weeks ago, and have had the fear of my Melanoma coming back for a 2 years now. I was diagnosed with Superifical Spreading Melanoma on my left side of my stomach in 2012 Stage 1B with a mitotic rate of 2. I had the usual procedure to remove quite a bit of extra tissue around it, and from that moment on I've been worried.

In November of last year (2013) I noticed a small lump (about 1 and a half cm) on the left side of my spine basically just above my shoulder on my back. I was told it was most likely a cyst, but I chose to get it off anyways. I have no other cancerous symptoms, and from what i could feel, it did not change in the last 5 months I felt it. I got it removed 8 days ago, and my doctor called me yesterday and told me that the pathologist was sending it off for a second opinion. Is this normal? Is it a bad thing they need a second opinion? My first Melanoma results came back in 3 days, and they were incredibly fast! I am hoping this is a good thing. Originally my surgeon who removed the lump last week thought it was a Lymph node, and the only thing I've been told by my doctor now is it is not a lymph node. She says it is something in the soft tissue. Could this be a cyst? How likely has my melanoma spread so far to the top of my back without showing in any lymph nodes? I had a CT scan as well before the lump was removed and everything was clear. PLEASE help if you have had any experience with this, you will seriously make my day!

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/20/2014 - 12:51am
Replies by: dhrahn, BrianP

My husband is stage 4. his doctor is recommending a clinincal trial MSB0010445 along with SRS.

Anyone in this trial??? I would be sincerely greatly if you shared your experience. (ie: did the drug work for you, side effects, anything else we should know)

My doctor does not have this trial so please  recommended trial site. We live in California. This would be our first trial.

Thanks for helping us.

Penelope

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Ajones1123's picture
Replies 4
Last reply 4/19/2014 - 8:44pm
Replies by: Ajones1123, Janner

Hi all,

My mother is going in for a wider excision on Monday for an atypical mole she had removed.  I know there is a TON of knowledge on this board and many of you are extremely educated when it comes to how to interpret pathology, etc.  I just want to know if anything looks extremely alarming on her path report and if conservative excision is appropriate.  The report is as follows:

Diagnosis: Compound Nevus with moderate to focally severe atypia

Microscopic description:

Left Calf: Sections show a proliferation of somewhat spindled melanocytes that are arranged in nests and as single units with a confluent pattern of growth mostly within the lower portion of the epidermis. Nested melanocytes are irregularly distributed in the lower portion of the epidermis, and nests bridge between adjacent rete ridges in areas.  The melanocytes display moderate cytologic atypia, including variation in nuclear enlargement and staining intensity, mostly at the dermoepidermal junction.  The superficial dermis shows nests and strands of similar appearing melanocytes. Additional dermal changes include fibroplasia, variable mononuclear cell inflammation, and scattered melanophages.  Scattered melanocytes also demonstrate variable degrees of cytoplasmic pigmentation. The immunostain for Melan-A shows a brisk junctional proliferation of atypical melanocytes with confluent growth pattern accompanied by a subtle limited pagetoid scatter above the dermoepidermal junction. It also highlights nevomelanocytes in the dermis.  These findings represent a compound nevus with moderate to focally severe architectural and moderate cytological atypia. 

Comment: while the specimen margins are free in the planes of sections examined, the distance to the peripheral edge is only about a millimeter, and conservative re-excision is recommended to ensure complete lesion removal if clinically warranted.

Thanks in advance to anyone who has any input on the report.  Is this just basically an atypical nevus (closer to the moderate end of the spectrum)?  Is conservative re-excision appropriate?  Thanks again!

 

April

 

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Replies by: POW, Beccy2907

My mother is currently going through one of the toughest situations of her life. As her daughter, I truly don't know how to vent or show how scared I am about her diagnosis today. Today after 4 weeks of visiting specialists and getting referred from hospital to hospital, it has come to the conclusion she has Choroidal Melanoma. It all started about a month ago when she started to complain of flashes of light, black spots and floating objects from her right eye. She said she had immense pressure on her right side of her head and her headaches and migraines were getting worse. Ever since I was a child, my mom has suffered from migraines, but doctors never said anything about them. When she went into her primary 4 weeks ago about her vision and headaches, her primary measured her intraocular pressure and said it was high. He referred her to a basic ophthalmologist , (which took her insurance 2 weeks to approve) and he was the one who determined there was retinal detachment and a "mass" pushing on the retina. Once again she was referred, to another specialist, now this doctor I completely have the highest respect for, he was thorough, he has been wonderful and supportive, he was the one who did the B-scan, ultrasound, determining the tumor was inside the eye, thus ocular tumor, when I saw the ultrasound, my heart started to race, the tumor not only takes over half of her eye, but about 3/4 of her eye. As I write this I find myself tearing up, I am truly scared, I just found out about this today. I dont live with my mom, and my moms English is very limited, I feel like she is just so unaware of what is truly going on, and I dont want to show how much anxiety and how scared I truly I am for her. This doctor does not specialize in intraocular tumors, so we have now been referred to another specialist, but now we must wait until insurance approves, and it is a waiting game. They still need to do an MRI and blood work they said to see if she doesnt have tumors in other places or if it has spread. I am really scared, my mom is my best friend and this is just not easy for me to take in.

Elizabeth G.

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Janner's picture
Replies 17
Last reply 4/19/2014 - 11:49pm

I don't often talk about my father here, but melanoma has claimed another warrior today.  At age 89, he was luckier than most that melanoma entered his life in his early 80's.  He fought cancer his own way.  The one advantage to being old is that all cells grow slower - even melanoma.  RIP Dad!

http://www.MelanomaResources.info

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Leslie'sHusband's picture
Replies 5
Last reply 4/19/2014 - 10:51pm

Les' surgery went well on Tuesday.  She had the clinical trial minimally invasive (laproscopic) complete lymph node dissection of her left groin.  Only three 1 inch long incisions in her thigh, one of which has the drain in it now.  There are definitely some divots in her thigh/groin area showing where they removed tissue below the skin.  Other than some nausea/vomiting from the anesthesia she had done very well.  We made the drive home from Duke on Wednesday afternoon, and she's getting around very well.  Now we begin another wait on the patology report on the removed lymph nodes.  We're due back at Duke with Dr.Tyler on the 28th to discuss the pathology, and possibly treatments.  I'm hoping that these removed nodes are clear.

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My sister was informed today that she has a Negative BRAF gene mutation KRAS.  SHe's not eligible for many clinical trials because her mutation is rare.  Would like to know if any others share this same type of mutation and if so what treatment option they tried.  

 

We are thinking of doing the IL2 first, then move to Yervoy, and hope that later on in the summer she will be eligible for a antipd1.  

 

Can anyone give any advice on their cancer or a loved ones?

 

We need just a glimmer of hope..

 

PS her husband also has Melanoma stage 4 and so you can imagine how heartbreaking all this is with having 2 small children.

 

BTW she is 46, no other health issues, good shape, liver nodule is 3cm and the lungs are even detectable.

 

 

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Shelby - MRF's picture
Replies 1
Last reply 4/18/2014 - 4:43pm
Replies by: Tina D

Dear MPIP Community,

We were recently contacted by Integrated Research and Data, a research company based out of Ft. Lauderdale, FL. They are currently searching for melanoma patients, diagnosed at different stages, to participate in an online survey. The goal of their research is to understand different aspects of patient needs and treatment plans. 

The first step would be a screening done by phone. Follow-ups would then be done to get the right amount of different types of patients. If you are selected to participate in the study, you will be given a $150 Visa prepaid debit card. The survey, if you are selected, is expected to take approximately 40 minutes of your time. The survey is encrypted to meet HIPAA compliance and particpants will not be contacted afterwards unless it is to confirm your mailing address to send your payment. 

If you are interested, please email MelanomaStudy@IntegratedResearchandData.com and you will be contacted to pick a time that is convenient for you to go through the 5 pre-screen questions. 

I hope everyone has a nice weekend!

Sincerely,

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/19/2014 - 10:42pm
Replies by: BrianP, DZnDef

I'm wondering if anyone has ever tried any alternative treatments(ie, natural/nutrition)? I've been reading about Dr. Gonzalez in NYC.  There are 3 melanoma case studies on his website.  Very interesting.  

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Anonymous's picture
Anonymous
Replies 0

For east coast there's now some listing.  On MIF's melanomaforum.org

 

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mark1101's picture
Replies 12
Last reply 4/19/2014 - 11:22am
Replies by: Bubbles, hdevlin, JoshF, BrianP, kylez, Anonymous, mark1101

Aynone who has already gone through Il-2 able to tell me what the treatment was like and how side effects impacted them?

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/18/2014 - 11:08am
Replies by: kpcollins31, melissa ann, Anonymous

My husband had a melanoma mole removed over ten years ago before we even met,  and was fine ever since.  Last year he noticed a lump under his arm, had a ultrasound done and was told it looked benign. Now 7 months later, at the insistance of his dermatologist, he had it looked at again and asked for a biopsy.  They just told him today it is melanoma.  I am in shock.  we don't even know what stage yet, but since it was something he could feel and has been around since last year, that makes us feel worse about prognosis.  It would help if I heard from others who had been through somthing similar and had a positive outcome?  So sad today.

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secondhalf's picture
Replies 2
Last reply 4/19/2014 - 2:21pm
Replies by: secondhalf, SoCalDave

We are  in the early stages of planning Round 2 with Metastatic Melanoma Stage 3.  One option for treating the is isolated limb perfusion chemotherapy at Georgetown.  We turn to those of you that have blazed this trail - what are you thoughts on this treatment?  

We are still waiting to see if this tumor is BRAF negative like the first one that was found in the axilla.  The 'new' tumor is in that same side and it grew quickly.

We also have our Johns. Hopkins visit scheduled.

Thanks in advance!

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Marianne quinn's picture
Replies 5
Last reply 4/17/2014 - 11:18pm

My husband was in the 10 mg. Ipi arm of the ipe vs. interferon trial. He did very well with the induction phase- being careful with his diet and a rash that is pretty easily controlled with Benadryl and lotion. He was 3C.

2 weeks after the induction phase, a CAT scan was done, then a PET.. It showed a 2 cm. nodule in the liver by his diaphgram.  We were devastated. A biopsy was done ( with difficulty) and it was positive.

Stereostatic radiation or ablation was offered. A very confusing story, but  another CAT scan for placement for stereosstatic radiation was done  2 weeks  later. and all the radiologist said was "very small, a blush. We elected to go with ablation for a variety of reasons. We are wanting another CAT scan before surgery as the radiation oncologist could not give us a dimension on the lesion. I don't know why as the lesion on the CAT scan and the biopsy done with CAT scan was very easily seen. This is upsetting.

My question is - has this happened to anyone? The oncologist says the ipi is obviously not working due to him being NED prior to entering the study .( December 31, 2013) I am not sure that is correct. We are seeomg  a general oncologist who we like very much but who admits she has little experience with ipi. I know that ipi can have a delayed reaction and can make a scan look horrible at first. The main concern seems ti be that he was NED prior to the study. He has been removed from the study.

If this lesion has disappeared, he wants to get back in the study. Is that possible?

Has anyone out there had good results with ablation?

Has anyone gone from NED to Stage 4 while on ipi? What happened to you?

I was so worried about the 10 mg ipi side effects etc. It never crossed my mind that a lesion would show up right after he reached therapeutic levels . This sucks.

Any info will be greatly appreciated. We will probably ask for a consult with a melanoma specialist after the surgery. We would have asked for one earlier, but things were going so well there did not seem to be a need.

Thanks.

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